Last day
I met with Dr Rappaport today and am very glad that life can relax a bit and get back to normal (which is always a relative term, right?). Until she starts having visible signs of seizures and unless anything else crops up I plan to keep her out of the hospital and Dr offices as much as possible. Tomorrow they have a little bit of summer school in the morning and I am going to do a quick round of miniature golf (she has her heart set on it so we’ll make it as fun as possible) and probably an hour or two at the beach courtesy of Mrs P.
Maybe this is kind of a gift. If I spend as much time with her as possible and fit several years of life into a small amount of time I won’t have many regrets. Maybe I am fooling myself but at this moment in time, I am doing better than most people would (in my unprofessional opinion). I’m sure that will change and change back but I don’t care.
Now I need to figure out the next step as far as getting her into a school for the visually impaired. This is definitely something that will be immensely beneficial to her and hopefully keep her mentally PRESENT for as long as possible. If we didn’t live so far away from Perkins it would be a “no brainer.” I’ve figured out harder problems. I’m sure I’ll sort this one out soon enough.
TeamRachel aka mrskatvon is both a website to gain public awareness of Juvenile Batten Disease (which affects my oldest daughter) as well as a journal to remember the events in our lives.
Rachel was diagnosed with Batten Disease in July 2009 and while we knew something was "not right" we had no idea that such a nightmarish disease existed. There are dozens of nasty, orphan disease which affect people both very young and old.
Aside from dealing with the changes of Batten Disease in my daughter, Rachel, I have tasked myself with making life memorable for all of my children to make sure that (at least) 3 of them grow up to be as well adjusted and happy as possible.
Just as a friend and observer, I think you’re doing great. Wish I was closer and didn’t have to observe so much and could be a physical help. Again, love you!!